Methotrexate or Sulfasalazine, the lesser of two evils?

[karenfizz]

I recently posted about a flare of hand pain on reducing from 4mg to 3 over Christmas; I wanted to add this development to that post but couldn't find it so if anyone can tell me how to search for 'my posts' or by name thanks very much. Anyway, re the hand pain, I saw my rheumy today who says its not a flare of the PMR, its sero negative arthritis and I must start on methotrexate or sulfasalazine; I have opted for sulfasalazine on minimal knowledge except that it sounds less toxic than the other. Does anyone have experience of this, is it a tablet or as a friend suggests, an infusion? The thought of having bloods every 2 weeks is sobering, I'm not anti drug but really keen to take as little as possible to control my symptoms; shoulders and hips ae fine. Rheumys seem so keen to get us off pred only to replace it with something equally or more toxic. Any reassurance gratefully received!

[DorsetLady PMRGCAuk volunteer]

Hi

Can’t help on the medication issue - not been on either.

To find a previous post just go to your profile - tap your avatar (picture) - and brings up all your posts and replies.

But, as in this case, if you want to ask a new question it’s better to start a new thread rather than edit an old one.

[karenfizz in reply to DorsetLady]

Thanks for that, really helpful as I also read that Mrs nails has posted a lot on methotrexate before, so will look her up

[Hidden]

Hi Karenfizz

There are a few of us on Methotrexate but l can’t recall anyone being on sulfasalazine but l may be wrong.

Have a look at my Profile, as you rightly said l’ve posted a lot on Methotrexate.

drugs.com/compare/methotrex...

Good Luck with your decision 🍀

MrsN

[Brikel]

Hi

I have been on maximum dose

(6 tablets a day) Sulfasalazine now for about 3 years Without any adverse affects

(apart from making your pee yellow )

Together with a biologic

( Benepali ) it works well for me

I hope this helps

Regards

Brian

[PMRpro Ambassador]

I was "offered" sulphasalazine when I finally saw a rheumy and PMR was the likely diagnosis. He didn't agree and kept saying it was a, b, c forms of inflammatory arthritis. He didn't give up when each was ruled out and my response to 15mg pred was within a few hours - but I was about to move to Italy and it must be overseen by a rheumatologist so it was postponed. I wasn't enthusiastic, you have to avoid the sun - not that I sunbathe but it is rather difficult to avoid sun here! No-one here has ever suggested it. I did try methotrexate with the hope it might reduce the pred dose but the fatigue almost finished me and it simply wasn't practical to continue. I have absolutely no problems with pred except for being unable to reduce the dose!

However - do you have the proof that your wrist pain is due to joint erosion with an inflammatory arthritis? I would want to see it.

[York54]

I took Sulfasalazine many years ago to help me off steroids when I had a bad flare of ulcerative colitis. I was told then that it was originally used for severe joint pain, but as I had problems with joints too ( common with bowel disease) I took it. It was great, however I then developed interstitial pneumonia is which my respiratory consultant may have been caused by sulphasalazine so I came off it. When I had another flare, steroids again ,this time I tried azathioprin. That worked too and I was steroid free. Taken off this after a few years as not good to be continually immune suppressed. Hey ho developed PMR , back on steroids and now trying hydroxyichloroquine!! My immune system really dislikes me!!! Good news is, I have been discharged from the respiratory consultant as my lung function is stable now, I’m monitored by the gastro s but still on Pred for my PMR! At one time I saw 3 consultants. My hubby says I’ve pushed the in sickness and in health to its limits!! Lol😂😂 We have just celebrated our Ruby wedding so not all bad❤️!!!

[York54 in reply to York54]

pneumonitis not pneumonia !!

[Theziggy]

I was put on Methotrexate but it didn't agree with me - liver seemed affected. Then they tried me on azatrioprine which didn't agree with me either. The Rheumy said he wouldn't try any other drug as they would all have the same effect. So, I am back on just Prednisolone.

[Longtimer]

My sister has taken Sulfasalazine for Rheumatoid Arthritis, it takes several weeks to have an effect....it is a DMARD.....you will have regular liver checks while on it. Hope it works for you....good luck...

[Bailybiscuit]

I had pmr, then Seronegative arthritis. I was put on methotrexate alone, then stopped as my liver results went high. I am back on it with Imraldi. I haven't had any side effects from any thing. (I have been on other biologics too) I don't think you hear from people who don't get side effects, only the ones that do. I always drink a lot of water during the day I take methotrexate as have seen others say to do that.

[Bailybiscuit]

I was diagnosed with other sorts of arthritis as I didn't respond as I should on steroids .The last being inflammatory arthritis but the one I felt they were right about was psoriatic arthritis. My GP still thinks I also have pmr but I don't know. My mother had pmr and GCA so it is likely

[karenfizz]

I don't know why everyone seems so keen to get me off steroids when 4mg is a low dose anyway, only to put me on a big hitter drug like sulphasalazine or methotrexate which seems far more toxic to me if I have to have bloods done/liver checks every 2 weeks? Is sero negative arthritis quite common as an adjunct to PMR I wonder? I'm going to do some research this w/e to try and have the discussion with pharmacist on Monday but sometimes I feel that patients who don't toe the line are just a nuisance to the medics!!

[PMRpro Ambassador in reply to karenfizz]

I'd want proof there was a good chance it WAS arthritis. The DMARDs are to reduce the damage to the joints which are what cause the deformity. RA can be managed with low dose pred if there is no erosion in the joints - and with LORA (late onset) there often isn't I believe.

[Constance13 in reply to karenfizz]

I have sero negative arthritis too but I've never thought of it as an adjunct to PMR.

I have had PMR for 8 years and I am on 4mg too.

[Bailybiscuit]

I am still on 5mg před but waiting to hear if I stay on it or not. My synacthen test results were low. I'm on it as I became steroid dependent after 5 years of being on them.

[PMRpro Ambassador in reply to Bailybiscuit]

What exactly does "steroid dependent" mean I wonder? PMR has a mean duration of pred management of 5.9 years - you need the pred to manage the inflammation and have to taper off it to see if it the PMR is still there. If you are on some pred then adrenal production is likely to be suppressed. I don't call that steroid dependency though.

[Bailybiscuit in reply to PMRpro]

I don't really know but that was on my hospital letter. I am on methotrexate and Imraldi but to get off steroids it has taken about 18 months of very slow tapering as before I was in too much pain at 10mg, the lowest I could get. I am supposed to be a mystery to anyone I have seen. Most of the time my ESR and CRP are normal, they were only raised at the start of this. I don't know if I still have pmr or ever did but they can't seem to stay on a diagnosis. Nothing shows on blood tests except I have a P Anca but not really sure about that, I think it means I could develop vasculitis. On Tuesday I will find out if I stay on steroids.

[PMRpro Ambassador in reply to Bailybiscuit]

Do they have any evidence to back the use of a TNF-alpha inhibitor? They are expressly warned against in PMR.

If you are struggling to get off pred even with mtx and a anti-TNF drug it suggests it could be PMR (or something else of course) but preseumably they are working on the concept that PMR only lasts 2 years so it must be gone by now. Hum ...

[Odosmum in reply to PMRpro]

I take etanercept and have done for several years (sorry, I can't remember how long). This is for inflammatory arthritis. It has to be used with another DMARD, usually Methotrexate, but I take Leflunomide. The combination has been quite successful treatment for me, although pre PMR and pred, there were signs that I was needing to change my drugs again. In spite of all these drugs, PMR struck 4 years ago and GCA nealy 3.5 years.

[Bailybiscuit]

I just don't know. My Mum had pmr and GCA so I assumed I had and I suggested it to my gp. I was always A typical for pmr. I seem to be different for most things. I see a chiropractor and he says he has only ever had one patient like me, a man and he calls us both quirky. Even when I had a frozen shoulder that he treated he said most people's shoulders would have got better on their own without treatment but mine went on for a few years.

[Odosmum]

I have had inflammatory arthritis for 26 years and have taken both drugs. Sulfasalazine was the first DM I tried and I took it successfully for many years. There was some reason why I couldn't take the full dose of 2 grams per day - I can't remember why, but the dose I took worked until it didn't. Oral Methotrexate was the next one and we gave it a good year. I felt quite ill taking it, it took nearly a week to get better, and then it was time for the next dose, but the bottom line was it did not work for me. This is quite unusual as most people I have spoken to do well on methotrexate. My take on your dilemma given my experience - try the Sulfasalazine first. Good luck!